I'm NOT Lazy! I have a brain injury

or Things We Want You To Know About TBI

As a MTBI survivor on a journey to being a "thriver" one of the frustrations I face is other's in my life understanding the symptoms of brain injury.  I've been offered tons of well-meaning advice on how to get my life back, help that wasn't helpful because without understanding what goes on within the injured brain...most of the advice is not helpful and in some cases...detrimental to moving forward in recovery.

If you have someone in your life with a brain injury, 

here are some things we'd like you to know:

I'm NOT Lazy! - While I do get fatigued from physical activity, using my brain to think, organize, and process sensory information causes a faster drain on my energy than doing physical things now.  When "brain fatigue" strikes it becomes more difficult for me to clearly think, speak, find words and I need rest or  sleep to recover.  If you observe me carefully, you'll see when my batteries run out.

The Common Face of Brain Injury Looks "Normal" - I can wash a car, lift grocery bags, shovel dirt, write, read and many other things I once did.  My injury is invisible to the naked eye.  It takes living or working with me on a daily basis to recognize some of my deficits.  Some days I only have 4 good hours in the morning where I can function "normally" then  I crash between 1-4pm for a (several hour) nap.  Going to the grocery store can overload my brain with the lights and so darn many choices.  I might wander around not getting what's on my list, or overspending on items I did not need.  I might not understand what you're talking about so I sort of shut down and don't hear what you say.  I'm afraid to tell you not to explain because I don't want to hurt your feelings.  New information can be too much for my brain to process.  I'll drop off the end of a story if I can't find the words to tell you what I know I mean...it appears rude.  I'm not usually aware that I do this.

Listen to me Patiently - Give me time to find the words I want to say.  Many times they're in my head, but I can't say them.  It can take time for my brain to re-route my thoughts, but this is the healing process.  When you put words in my mouth I have to evaluate if that's what I meant to say, by then I forget what I was going to say. This is frustrating for me and I might withdraw because it's not worth the brain drain.

I'm not being Anti-Social if I want alone time - At home or out in a public place there are conversations, loud noises, strong lights, and other distractions that fight for my brain's attention.  The filters in my brain aren't working properly so I hear everything - which confuses me.  My senses get overloaded easily which can lead to stuttering, difficulty find my words, knowing what I want to say and emotional lability can make me sob for no apparent reason which is embarrassing for me.  I can't control these emotions and people don't understand.  If I want to be alone, I'm not being anit-social...I'm trying to cope with these changes the best way I know how.

I Don't Ignore You On Purpose - You may notice when talking to me that I close my eyes.  I'm not ignoring you.  I'm trying to focus my attention on what you are saying.  If there are other people, the television, a radio or other visual distractions...I can't focus on what you're saying to me.  If it's too much for my brain to handle, my brain literally tunes you out.  Please talk to me instead of jumping to conclusions that I'm not interested in what you have to say.

Brain Injury Takes A Long Time To Heal - Please don't expect me to be the same as I was before my brain injury or have the same skills.  As my brain creates new pathways to process "normal" information I can make giant strides forward in my recovery to then fall back miles from where I was just last month.  This is just as, if not more, frustrating for me as it is for you.  I want to be the best me possible, but sometimes I have NO control over what happens.  Please support me, I need you more than ever during these times.  I might never be who or what I was before the brain injury.  This fact scares me, even if I don't tell you this...I am scared.

Please don't treat me like a child - While I may feel like a child that needs to be taken care of now, I am an adult.  I don't like feeling this vulnerable.  I'm still smart, my brain just isn't working properly against MY WILL.  Most of the time I know exactly what's going on, but there are times that I can't communicate with you.  Don't talk down to me, I'm not stupid.  Don't treat me differently, I'm still me in here.

Please be Patient with my Memory - Just because I don't remember something you said doesn't mean I don't care.  The mechanism that puts memories into long term memories isn't working properly anymore.  It might take some time for me to remember, or I might not remember at all.  I also might repeat myself over and over because I don't remember telling you something important to me.

I Need Your Support - More than any other time in my life, I need you.  Learn all you can about my brain injury.  Every one is different.  In order to help me, you need to be knowledgeable about my particular injuries and symptoms.  Know that I am doing the best I can.  I don't want to be like this anymore than you want to see me like this.  When I talk about my deficits please don't brush them aside.  As I become more self-aware and I recognize my deficits...I'm not being negative by pointing them out...I'm finally seeing areas that I need to work on.  This IS a step forward in recovery.  By discounting my observations I will question my ability to self-monitor.  This causes me to second guess myself and is not helpful.  Please be honest with me, it's the only way I know that I'm on track.  I need your validation of my experiences.

I might be Overly Emotional - No matter what my emotional composure was prior to my brain injury, there is this thing called "Emotional Lability" that happens when I'm in system overload.  I can react with inappropriate emotional displays that are OUT OF MY CONTROL from sobbing to having a panic attack to being angry.  Most likely it is a response that my system is shutting down.  I need to be removed from the environment, quiet helps, your calmness also helps me regain my composure.

System Overload - As my brain works to re-wire itself around the broken bits, it takes more time and energy to perform seemingly simple tasks.  While I might know this will happen at the grocery store (sensory overload), it can happen anywhere, anytime and for unknown reasons.  All of a sudden I feel like I'm the Energizer Bunny and somebody just ripped out my batteries...I'm done.  My system is shutting down.  Think of it like a computer that starts running slowly, stops responding to you and you need to reboot the system for it to perform again.  This happens to my brain.  My brain needs sleep to (repair & recover) reboot and work again.

Help isn't Help if it isn't How I Need It - I've lived on my own for years.  I was independent before my brain injury.  Asking for Help is difficult for me.  Sometimes I am not even aware of how you can help me.  Please ask HOW you can Help me best, then follow through...I'm not good at follow-through now.  If I have to instruct you how to do a task, it might be easier on me to do it myself.  Explaining can tire me out more quickly than doing the task myself.  Please don't get angry with me if I don't like how you're helping me, I need you to work with me.  I might need you to call and make doctor appointments for me, take me to the doctor because I shouldn't be driving, or to be my memory when mine fails.  I might need you to work with me to create an alternative plan on how to do a task you find easy.  Be there for me.  Try not to judge me.  I Need you to Pull Me Though This.  I am worth it.  At least, I hope I am.  Sometimes I doubt my value now.

Sometimes I feel life I have multiple personalities - There is me without medication.  Another me on medication.  And still another me experiencing the side effects of my medications.  It's worse when I FEEL the differences.  While a medication might take away the ice pick headaches, the also make me feel like I'm floating around in space..untethered, like I'm living in a day dream. At times I'm not sure which is worse, the headache or the side effect.

I get headaches that literally bring me to my knees - On tope of the constant headache I've had since the accident....Another type hits me out of the blue that feels like someone stabbed me in the head with an ice pick.  There is no rhyme or reason for these piercing headaches that I can find.  They just happen.  Anywhere, anytime.  They can last for seconds to minutes.  It feels like forever to me.  The pain does not end.  I'm afraid I'm going to die it hurts so much.  I can't concentrate on anything else, but making the pain go away.  If I don't respond to your questions, please don't yell at me to force a response.  The pain is so overwhelming that I cannot think or speak to you.  All that matters when this happens is breathing through the pain.  Nothing else exists for me.  When it does end, I can tell you what just happened.  Please wait for me to respond.  We can create hand signals for when this happens so you know I'm experiencing "that headache".

See Me - I'm still in here...somewhere.  I might never be that other person again, but I am in here.  Please help me find the core of myself again.  I feel lost, confused and scared.  I fear telling you this because I don't want you to feel bad...or end up in a white rubber room with a nice buckled jacket(yes, I feel crazy sometimes!).  Remind me who I am.  Sing my song back to me so I can recognize it and sing it again myself.

This partial list is based on my own personal experiences since my brain injury.  The further I get from the date of the accident, the better I am.  I've had setbacks where I was knocked back further than I moved forward in my recovery.  My family has not always understood that this is part of the process.  Some days I still wake up and do not understand the English language in written or spoken form.  This is terrifying.  Please bear with us.  If you cannot be there for us, we might be better off without you in our new lives.  I know this sounds harsh, but so is our reality.  We'll get over it and find those that can be what we need to move on with life.


Namaste
Kristy